Well, for the better part of the last 4 weeks we have been getting rained on here in Houston. It seems like forever since I have seen two days go by without any rain. It really sucks. But, that is the price of living in a city that used to be a swamp.
The good news, it did not rain on the Fourth of July or fathers day. That means Laura got to go swimming both days. Now the fourth of July swimming was really cold. It had been raining for three weeks at that point. But she still splashed and floated around quiet happily for a couple of hours.
But still, I am starting to feel like we are all walking around in a permanent pruney state from all of the water. The rain sure beats the heat and humidity that we normally get.
Through all of it, Laura is just as happy as she always is. As long as someone plays with her is paying attention to her, she does not care what is going on with the rest of the world.
That is not entirely true. Laura has a new teacher at school. She does not know the teacher yet so she gets clingy and cries when mommy drops her off each morning. We know this is just a stage she is going through, but it is still tough to walk away from our crying daughter.
We meet with the lady that will be Laura's new teacher at The Rise School next week. The meeting should be about an hour. I think it is mostly to discuss where Laura is currently at, and what we would like for her to accomplish in the next year.
We are having a hard time with this. We know The Rise School is the best place for Laura, but she will not be right down the hall from Tara anymore. We cannot just pop in and see her when we want to. This is going to be rough. But, this is what is best for Laura. And that is what we want. I am not looking forward to this.
Overall, Laura's therapist's think she is doing well. She is still not crawling, but at this point it is by her choice. She can easily hold herself up on all fours and rock (she is really quite good at it). She is getting to the point where she can stand without you having to be ready to catch her. She can hold herself up. Her therapists do want her to crawl before she walks. I am not sure if Laura agrees with this. Time will tell.
The Down Syndrome Association of Houston (http://www.dsah.org/) has scheduled their Buddy Walk for this year. It will be Saturday November 6th at Jones plaza. Laura will once again have a team. Her team is Laura's Lions. The walk is free for anyone and everyone who wants to come out, just register first so there is a record of who came out. We look forward to seeing you there. Here is hoping we can raise a ton of money for at free event.
Showing posts with label The Rise School. Show all posts
Showing posts with label The Rise School. Show all posts
Thursday, July 8, 2010
Friday, October 16, 2009
Joys and frustrations
Well it has been an interesting week, to say the least. I am going to deal with the frustrations first, so I can work them out of my system.
Some of you know that we have applied for medicaid for Laura. Medicaid, of course, is a government run health care program for low income families. To qualify you cannot make more than a certain amount of money depending on how big your house hold is. We did not qualify. We did not expect to. That is fine. Let those who need this program take advantage of it.
A similar program, that is supposed to provide assistance for those who can not work is run through Social Security. For those of us who work, yes the same government institution that feels the need to take a portion of everyone of our pay checks. The program is called SSI Disability. You may have seen lawyers talking about it on television. The goal of this program, is to provide health care to those who cannot work due to some disability. To qualify for it, you have to first qualify for Social Security Supplemental Income. Now, how do you know if you qualify for the supplemental income you ask? Simple, they use the exact same guidelines as Medicaid.
Can you say "from the Department of Redundancy Department"? Two separate programs that are supposed to be aimed at two very different groups, yet they use the exact same guide lines. So if you are in a lower income tax bracket, or are an illegal immigrant, you can help yourself to as much government funding as you need. For those who want to curtail and rein in wasteful programs, here are two different yet the same programs for you to start with. Here is the bottom line, if either Tara or I quit our jobs, or we have more kids, Laura will qualify for these programs. Someone explain to me how this makes any kind of sense please.
Ok, that is the frustration side of things. Now for the fun stuff.
Laura had her regular therapy session this week. Leigh, Laura's therapist, continues to be impressed with how Laura is doing. Laura's muscle tone continues to look good. Low muscle tone is a common problem in children with Down Syndrome. Low muscle tone can lead to problems like slow development of speech patterns, delays in crawling and walking, and other further reaching issues. Laura however, works out rigorously several times a day, and so does not appear to have low muscle tone issues.
She currently is capable of holding herself on her side. That means we can place her on her side and she will stay there on her own, with no assistance from us. She has rolled on to her side several times in the last few weeks, and earlier this week she rolled from her side to her stomach all by herself. We are very excited.
Speaking of speech patterns, Laura is a little chatter box. If you are close to her and have captured her attention (the child is fascinated with light sources, it is the weirdest thing) she will coo, and grunt and moan at you for as long as you will pay attention to her. Her smile is a constant source of joy around our family. All of this is continued proof that physical therapy does work.
This week we went and toured the Arbor School here in Houston. The Arbor School is a private school that accepts and works with all kinds of children with all kinds of challenges. We were impressed with their setup and their future plans. Over all a very nice program. That being said, if we are given a choice between The Arbor School and The Rise School we would likely choose The Ris School. Mainly because the Rise School caters to Children with Down Syndrome. However, both are great programs.
The final bit is an update on the Down Syndrome Association of Houston Buddy Walk for 2009. Laura's team is set up. It is called Laura's Lions. It is Captained by Judy Johnson, Laura's Grammy. To date we have 30 walkers signed up and have raised almost $1,000.00 dollars. There is still plenty of time to sign up.
PLEASE go to www.dsah.org web site and select the Buddy Walk link on the left side of your screen. From there, to get to Laura’s page click on the Buddy Walk Link now in the middle of your screen. Then, on the find a team option please type Laura’s Lions under team name. From Laura's page you can click on the Home button to read more about the Buddy Walk program and details of the days events. From here you can either sign up to walk (a $10.00 per person fee) with us on November 14th, you can choose to donate or you can do both.
We hope you decide to participate in this year's Houston Buddy Walk by either registering as a walker for our Team, "Laura's Lions", or by donating to our cause. We are looking forward to adding more lions to Laura's pride!!
Some of you know that we have applied for medicaid for Laura. Medicaid, of course, is a government run health care program for low income families. To qualify you cannot make more than a certain amount of money depending on how big your house hold is. We did not qualify. We did not expect to. That is fine. Let those who need this program take advantage of it.
A similar program, that is supposed to provide assistance for those who can not work is run through Social Security. For those of us who work, yes the same government institution that feels the need to take a portion of everyone of our pay checks. The program is called SSI Disability. You may have seen lawyers talking about it on television. The goal of this program, is to provide health care to those who cannot work due to some disability. To qualify for it, you have to first qualify for Social Security Supplemental Income. Now, how do you know if you qualify for the supplemental income you ask? Simple, they use the exact same guidelines as Medicaid.
Can you say "from the Department of Redundancy Department"? Two separate programs that are supposed to be aimed at two very different groups, yet they use the exact same guide lines. So if you are in a lower income tax bracket, or are an illegal immigrant, you can help yourself to as much government funding as you need. For those who want to curtail and rein in wasteful programs, here are two different yet the same programs for you to start with. Here is the bottom line, if either Tara or I quit our jobs, or we have more kids, Laura will qualify for these programs. Someone explain to me how this makes any kind of sense please.
Ok, that is the frustration side of things. Now for the fun stuff.
Laura had her regular therapy session this week. Leigh, Laura's therapist, continues to be impressed with how Laura is doing. Laura's muscle tone continues to look good. Low muscle tone is a common problem in children with Down Syndrome. Low muscle tone can lead to problems like slow development of speech patterns, delays in crawling and walking, and other further reaching issues. Laura however, works out rigorously several times a day, and so does not appear to have low muscle tone issues.
She currently is capable of holding herself on her side. That means we can place her on her side and she will stay there on her own, with no assistance from us. She has rolled on to her side several times in the last few weeks, and earlier this week she rolled from her side to her stomach all by herself. We are very excited.
Speaking of speech patterns, Laura is a little chatter box. If you are close to her and have captured her attention (the child is fascinated with light sources, it is the weirdest thing) she will coo, and grunt and moan at you for as long as you will pay attention to her. Her smile is a constant source of joy around our family. All of this is continued proof that physical therapy does work.
This week we went and toured the Arbor School here in Houston. The Arbor School is a private school that accepts and works with all kinds of children with all kinds of challenges. We were impressed with their setup and their future plans. Over all a very nice program. That being said, if we are given a choice between The Arbor School and The Rise School we would likely choose The Ris School. Mainly because the Rise School caters to Children with Down Syndrome. However, both are great programs.
The final bit is an update on the Down Syndrome Association of Houston Buddy Walk for 2009. Laura's team is set up. It is called Laura's Lions. It is Captained by Judy Johnson, Laura's Grammy. To date we have 30 walkers signed up and have raised almost $1,000.00 dollars. There is still plenty of time to sign up.
PLEASE go to www.dsah.org web site and select the Buddy Walk link on the left side of your screen. From there, to get to Laura’s page click on the Buddy Walk Link now in the middle of your screen. Then, on the find a team option please type Laura’s Lions under team name. From Laura's page you can click on the Home button to read more about the Buddy Walk program and details of the days events. From here you can either sign up to walk (a $10.00 per person fee) with us on November 14th, you can choose to donate or you can do both.
We hope you decide to participate in this year's Houston Buddy Walk by either registering as a walker for our Team, "Laura's Lions", or by donating to our cause. We are looking forward to adding more lions to Laura's pride!!
Wednesday, July 29, 2009
Musings, Thoughts and Other Stuff
"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose"
Romans 8: 28
I have been thinking about our current direction in life allot the last few months. Because we found out before Laura was born we were able to prepare emotionally and mentally for what the three of us would be going through. I am still amazed at how much the two words "Down Syndrome" that we heard back in March have taken hold of our life. Because of these two words we are making friends, and meeting people that we would have never met. I can tell you that the Down's community is an incredibly supportive, informative and caring community.
As you know, we toured the Rise School Last week. Their program is incredible. When we toured the school we were amazed. Each of the teachers and care givers were very active with the kids. They used multiple teaching techniques (which included singing and a microphone that the kids could not wait to use) that helped the kids to better learn the lesson for the day. Sign language was taught, to give the youngest kids the ability to communicate. In one class room the kids were so excited to see a new baby, that they gathered around Laura and oohed and ahhed over her every movement and squeak. It was so much fun to see them enjoying everything about their day, and to be treated like normal 2, 3 and 4 year olds. What really surprised me was to see how many adults with Down Syndrome worked at the school. The Director told us she was very proud of the fact that she is able to employ 5 Down's adults. We are currently on the waiting list and are very hopeful we will get in, in 2010. So if you are on the same waiting list and are ahead of us, please know that your spot will go to a beautiful girl if you decide not to attend the Rise School.
Some of the doctors we have met have also introduced us to a few couples. These couples are a little further along in their lives with a Down's child, but they have been amazing resources for us. They have guided us to several of the websites that you see posted on this blog. We are looking forward to getting to meet them face to face in the future. This will likely happen at one of the many support group meetings that happen in, and around Houston.
We have also met a couple who have a newborn with Down Syndrome. Their child is just about the same age as Laura. We are excited about being able to go through this with a couple that is in our same place. There is something reassuring about knowing you are not alone. Having these kinds of resources to draw from, beyond friends and family (whom we love and are incredibly supportive as well), is amazing.
If you are feeling overwhelmed, scared, frustrated, angry or any other "negative" emotion it is OK. You are not alone. There are many people out there who know how you feel and what you are going through. Reach out to them. We have found that being able to lean on the Down's community has helped us in ways we could never fully understand. We thank God daily for all of you.
Monday, July 20, 2009
"'For I know the plans that I have for you,' declares the Lord, 'plans for welfare and not for calamity to give you a future and a hope.'"
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Jeremiah 29: 11
Today I aaw something that was incredibly beautiful. I saw a place where children with Down Syndrome are loved, cared for and taught. The Rise School has an amazing program.
All I could think of as I was looking into the faces for those sweet innocent children, was what a long hard road Laura has. It broke my heart as I realized that her road gets harder and harder every day.
I firmly believe in the the laws of physics. One of the corner stones of those laws are the laws of Thermo Dynamics. The second law states that the universe is in a constant state of entropy. That means that the universe is proceeding from order to disorder. Not surprisingly The Bible predicts the same thing.
In our day and time we can see this happening. For proof I offer a simple example. I have lived the overwhelming majority of my life in the west side of Houston Texas. It is an upper middle class area that is quite nice. 20 or 30 years ago in most neighborhoods in the afternoon you could see any number of kids of every age running around at any time of the year. It was no big deal. The kids were considered safe in those nieghborhoods. Now kids are enroled in after school programs, no matter what thier age (sports programs and club meetings in Junior High and high school are basically aimed at giving the kids something to do until mom or dad gets off of work). More and more kids are enroled in private schools, or are home schooled, because thier parents do not trust the public school systems to keep thier kids safe. And who can blame the parents. Just watch the news and you will see evidence of this.
And it will continue to get worse. Just read some of The Bible prophecies that have yet to be fulfilled, but are only indications that the end times are getting nearer. It is into this world my wife and I brought a child. We both love Laura dearly. She is the greatest thing that has ever happened to us. She is beautiful and more fun that I ever thought possible. She is perfect.
As we toured The Rise School, I could not keep these thoughts out of my head. If she gets in, she will be safe, protected, loved, taught and cared for in away that is designed for Down's kids. She has her family, and mommy and daddy's friends to also keep her safe and fill her world with love. But, someday someone will try to take advatage of her innocense. They will use her sweetness to hurt her some how. That chances continue to rise with each passing day. It is my fear that for everything we will give her, that she will not be able to protect herself from this preson (whoever they are). Tara and I both pray that this never happens. We are clinging to God's promise to protect her all of her life. Please pray for her safety, and for the saefty of the the innocent little ones out there the world over.
Tuesday, July 14, 2009
The end of appointments for now.
"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."
Psalm 139; 13 - 14
Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.
OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.
Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.
Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.
We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.
Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.
The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.
Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.
To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.
We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.
The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.
We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.
OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.
You wove me in my mother's womb.
I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well."
Psalm 139; 13 - 14
Laura is 1 month old today. That means it is all up hill from here. This is going to be exciting.
OK, today ends the latest round of doctors appointments. 3 appointments in 2 days is allot if you ask me. Our pediatrician agrees, and was sympathetic.
Yesterday, I went over the results of Tara's doctor's appointment. I also discussed our appointment at Texas Children's Hospital. However, I did not give those results, and I am sure many of you are curious.
Over all Laura's cardiologist Dr. Macicek, was pleased with her. She was a good weight and was growing nicely. Her x-ray of her lungs looked good and did not show any problems. He wants to do a couple of things in anticipation of her coming downward trend. First, he wants to get more calories into Laura at each feeding. To do this we are going to mix her formula a little thicker. His goal is to store extra calories in her while she is still doing well. That way, when we hit the point where she starts her downward trend, due to her heart issue, she will still have the calories to burn and stay healthy, even if her caloric in take starts to drop.
We needed to meet with the Nutritionist to determine what ratios we need to mix Laura's formula at to get the intake the cardiologist wants. That is when all of the hoopla began that I wrote about yesterday. We have started mixing the formula at the desired ratios, and are looking forward to seeing how it affects her.
Second, during the check up yesterday the Cardiologist noticed an unusual heart beat for Laura. He assured us it was being caused by her heart condition. We did not have the heart to let him know that our pediatrician had noticed the same thing 2 weeks ago and was not concerned. Strangely, both our cardiologist and pediatrician described it as an almost absence of quiet.
The third thing he wants to do, is to see Laura again in 2 weeks to see how she is doing. At this point we may start Laura on Lasiks. It will depend on how she is doing and responding. We need to keep an eye out for circulation issues which could present as a blue tint in her hands and/or feet. The x-ray and the check he did this time did not reveal any fluid on the lungs. Dr. Macicek did indicate he wanted to try to get ahead of the curve for Laura as quickly as we could.
Today, we had a weigh in with our pediatrician. Laura is coming in at 8 pounds 7+ ounces. Meaning, she is starting to gain weight at a smidgen over 1/2 an ounce a day, which is amazing considering how much goes in to her. Dr. Pielop is quite pleased with her growth and weight gain.
To resolve the feeding issue from yesterday, we decided that it would be best to let Laura tell us when she is hungry. During the day we will wait until she makes the feeding motions and noises or until 4 hours pass between feedings. This will allow her to realize she is hungry and still let her pack on the calories. It will also give her the opportunity to get the feeding down. This afternoon she seemed to be getting hungry at about 3 1/2 hours. As we talked this through with the pediatrician, he deferred to whatever the nutritionist wanted. Which is fine, we just would have preferred a better attitude.
We just had two firsts with Laura. It is quite exciting. The first new thing we did was that we took Laura out to dinner with her Granny, Tara and I. We went to restaurant close to our home that we all enjoy called Buffalo Grill. The staff there were extremely happy to see Laura for the first time.
The second first happened while Tara was feeding Laura. Laura decided she needed to soil her diaper. And boy did she. I was in the next room and heard it. Unfortunately, Laura was sitting in Tara's lap taking her bottle, when the blow out happened. And by blow out, I mean out the side of the diaper and into Tara's lap. I am very excited (especially since it did not happen to me, yes I know it will). This was the first time Laura has done this trick. I am sure it will not be the last. Still, it was impressive.
We received a call from The Rise School today. They called to schedule a tour for either tomorrow, or next week. We had to opt for next week. I go back to work tomorrow, so that was not an option. We are looking forward to the tour as it is the first step to get Laura into their program. After the tour Laura goes on a waiting list for the school. We are hoping that we will not have to wait long. Unfortunately, we did not get her signed up before she was born. The school is that exclusive. If you are pregnant and have a confirmed diagnosis of Down Syndrome check out their web page. I have link to it up in the top right hand corner of the screen.
OK, folks it is getting late and I am getting tired. I will try to post tomorrow, and let you know how I handled going back to work. I am pretty sure I am going to be miserable being away from her all day.
Subscribe to:
Posts (Atom)
